Jeffrey B. Anderson, MD, MPH, MBA, refused to believe that infants born with serious heart defects could not gain weight, just one factor behind their high mortality rate.
A pediatric cardiologist at Cincinnati Children’s Hospital Medical Center, Dr. Anderson began studying infants with a rare condition called hypoplastic left heart syndrome (HLHS) — a malformation of the heart — as a cardiology fellow.
Dr. Anderson is now Associate Professor of Pediatrics and Chief Quality Officer in the medical center’s Heart Institute, and a faculty member in the James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center. For his persistent work seeking ways to improve the care and outcomes of HLHS patients, he was named the 2016 recipient of the American Board of Pediatrics’ Paul V. Miles Fellowship in Quality Improvement.
HLHS is one of the most complex forms of congenital heart disease. Until the early 1980s, HLHS was uniformly fatal. Even in 2015, the chance of an infant with HLHS surviving until his or her first birthday was only about 75 percent. Newborns with HLHS need open-heart surgery shortly after birth, then again several months later, and a third surgery a few years later. As of a decade ago, between 10 and 15 percent of these infants did not survive to the second surgery after being discharged home following their first surgery. In addition to this unacceptable mortality rate, infants with HLHS struggle with growth during the first few months of life, often experiencing growth failure.
“The rare nature of this disorder has limited robust learning about successful strategies to improve survival undertaken by single-surgical centers,” Dr. Anderson and colleagues wrote in a paper published in the July 2015 issue of Circulation: Cardiovascular Quality and Outcomes.
To address this gap, Dr. Anderson has been a key leader in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a network of parents, clinical teams and cardiologists from 60 care centers across the nation with an aim to reduce growth failure and mortality among infants with HLHS. “About half of these centers treat fewer than five HLHS patients a year,” he said.
When the network began, Dr. Anderson said, “We had several questions—Why do infants with congenital heart disease grow poorly, and does it matter? And can we reduce mortality for these infants between the first and second surgeries?”
Data from the NPC-QIC centers showed that growth rates matter a lot in these infants.
“Some cardiologists thought there was nothing you could do to make these infants grow,” he said. Still, some cardiologists were having better success than others. Dr. Anderson determined to find out what the more successful ones were doing differently to improve nutritional outcomes in infant heart patients, and as a result, improve the babies’ chances of survival. Now, he is determined to spread ideas for successful interventions.
“We follow the mantra ‘Steal Shamelessly, Share Seamlessly,’” Dr. Anderson said. “Centers shared their practices to help other centers improve their outcomes.”
He recently presented this work — “Using Improvement Science to Identify Best Nutritional Practices In a Rare Condition: Improving Growth in Infants With Hypoplastic Left Heart Syndrome” — to physicians and residents at both The University of North Carolina and Duke University schools of medicine, and to the ABP staff in Chapel Hill, N.C.
Dr. Anderson praised collaborative networks such as NPC-QIC that connect health care professionals who treat specific conditions. Through this collaborative network, clinicians could pool data from their patients, gathering enough information to see trends that individual clinics would not be able to recognize.
In addition to identifying factors that can improve growth for these infants, Dr. Anderson led a team of researchers that analyzed data for 1,163 infants from 52 surgical centers participating in NPC-QIC between 2008 and 2014. The team achieved significant improvements in interstage survival rates, despite no changes in medication or surgical strategies. The key, they suggest, was that centers learned from each other and from families as they deployed strategies to improve nutrition, parent education, and communication between cardiologists and primary care pediatricians.
Collaborations included a variety of professionals— nurses, dietitians, respiratory therapists, cardiologists, surgeons, developmental specialists and more. Perhaps most important, he said, was involving parents.
“We found that bringing parents into the conversation changes everything,” he said. “It shifts the focus from an independent to a collaborative practice.”
Dr. Anderson works closely with a parent support group called “Sisters by Heart.”
“Parents want to help,” Dr. Anderson said, “and they bring a different perspective to care.”
“What makes Dr. Anderson an incredible asset to the cardiac community as a whole is his dedication and willingness to work with parent partners,” said Stacey Lihn, president of Sisters by Heart and the mother of a child born with HLHS. “He respects — and intentionally elicits — parent perspectives and proactively engages with parents.
The Paul V. Miles Fellowship was established in 2013 to honor Dr. Miles’ years of service as the ABP’s Senior Vice President for Maintenance of Certification and Quality.
The fellowship is given annually to a pediatrician who has demonstrated excellence in improving the quality of care for children.